Charities have expressed their outrage after a BBC investigation highlighted the story of an autistic woman with a learning disability who was locked up in a mental health hospital for 45 years, of which 25 years were in long-term segregation.
Kasibba is believed to be originally from Sierra Leone and a victim of child trafficking. At age seven and despite having no mental health diagnosis, she was moved to a large, long-stay mental hospital where she stayed for 45 years locked up for more than 23 hours a day.
In 2013, clinical psychologist Dr Patsie Staite learned of Kasibba’s incarceration when she was carrying out a routine review of her care, but it took nine years to secure her release.
“I hadn’t ever seen anyone living in the situation that she was living in. And I think what was really shocking was it was all legitimised,” Dr Staite told the BBC.
Dr Staite said that staff had described Kasibba as “dangerous” and an “eye-gouger”.
She discovered a single incident in the records which appeared to have led to these accusations of violence. Decades earlier, when Kasibba was 19 and before she was placed in long-term segregation, a fire alarm had gone off and the locked ward was being evacuated. Kasibba was distressed and, in the confusion, she was approached by another patient. She scratched her, causing a cut to the other patient’s eye.
She submitted a 50-page report to Camden Council, the local authority in north London that had originally placed Kasibba in the hospital. The report concluded that she was not dangerous and was safe to live in the community.
A team of health and social care professionals set up a committee to work on Kasibba’s release in 2016. Changing Our Lives, a rights-based organisation, was part of the multidisciplinary team that worked with Dr Staite and the Camden Integrated Learning Disability Service (CLDS) team to harness a rights-based approach, spending six years working to achieve Kasibba’s release.
Lucy Dunstan, Deputy Chief Executive Officer, said: “Working as a rights based advocate alongside people who are stripped of their most basic human rights is a challenging role. We are often a lone voice, fighting against systems that don’t work for people who have been labelled as ‘challenging’ and ‘dangerous’, dehumanised by the very institutions that are meant to support them”.
The BBC said that Kasibba now lives in the community with the help of support workers, who engage with her and communicate with gentle touches, gestures and clear language. Her care manager said she loved fashion, was proud of her home and enjoyed social interaction.
“She has the most amazing sense of humour. She’s a beautiful human being,” the manager said. “After about two weeks of working here she actually came up and gave me a hug. This is not an eye-gouger, you know.”
The case will be explored in tonight’s BBC Radio 4 File on 4 Investigates. The programme also shares the experiences of 17-year-old Amelia, who is autistic and was detained as a 14-year-old, and of Maeve, who is autistic and has a learning disability. Amelia experienced poor and invasive care, which has caused her trauma, and she has been detained in long-term segregation for 2 years. Maeve has been sectioned for half of her adult life and, like Amelia, was sectioned as a child after not receiving the right support.
The Challenging Behaviour Foundation (CBF) is now calling on the government to start its intended shift from hospital to community by prioritising people who have been inappropriately detained in hospital for many years.
The Mental Health Bill, which is currently going through Parliament, will stop people with a learning disability and autistic people being detained under section 3 for treatment, but the government have said that this change to the law will not be enforced until there is sufficient community support.
The CBF is calling for a clear plan – coproduced with people with lived experience, families, and those working within the different parts of the system – setting out what steps will be taken to develop this support, accompanied by the resources to make it happen.
Jacqui Shurlock, CEO of the Challenging Behaviour Foundation, said: “Kasibba, Amelia, and Maeve’s experiences highlight the devastating impact of inappropriate detention. Inappropriate detention of people with learning disabilities and autistic people in Mental Health Hospitals is still happening and will continue to happen until there is sufficient community support.
“Kasibba is now living in her own home with the right support, after almost 50 years in hospital, but there are still too many people – including Amelia and Maeve – who are stuck in hospital.”
Mencap said that the programme is a stark reminder that over 2,000 people with a learning disability and/or autistic people are still locked away out of sight in mental health units – with too many languishing for years on end, with no clear way out, due to a failure to provide the right support in the community including the right social care and suitable housing.
In the 14 years since the abuse was uncovered at Winterbourne View Hospital, target after target to reduce these numbers and instead ensure that people with a learning disability and autistic people can get the right support in their local communities has been missed.
Dan Scorer, head of policy and public affairs, said: “The BBC have yet again exposed profoundly shocking cases of the mistreatment and inappropriate detention of people with a learning disability and autistic people.
“This couldn’t come at a more significant time when the Mental Health Act is undergoing major reform – a once-in –a generation opportunity to make meaningful change. But, to make a real difference for people with a learning disability, the right community support must be developed and right now there’s no plan to ensure this happens.
“It’s abundantly clear there’s a solution to this. People’s lives should not be ruined in this way and the traumatic mistreatment and inappropriate detention of people with a learning disability and/or autistic people must end.”
The National Autistic Society said that Kasibba had her life stolen from her after being detained since she was seven years old.
Tim Nicholls, Assistant Director of Policy, Research and Strategy, added: “She has paid the highest price because of an outdated law which still treats autism as a mental health condition and an abject failure to meet autistic people’s needs.
“Kasibba’s tragic story highlights how important it is that the Government’s new Mental Health Bill is passed and brought into force as soon as possible, with an immediate plan to make sure people get the support they need in the community. This can never be allowed to happen again.”
*Kasibba, Amelia and Maeve’s names have been changed
